Boca Doctor gives stroke, TBI survivors new shot at mobility

That's all it took for hundreds of stroke and traumatic brain injury patients from South Florida and nationwide to reverse years of debilitation. Now they're walking more steadily, reading more easily, concentrating better, speaking more clearly and regaining use of once-rigid limbs — long after giving up hope that their bodies would ever respond.

The 25-milligram shot at renewed independence is the brainchild of Boca Raton physician Dr. Edward Tobinick. His patented method for delivering the anti-inflammatory medicine, etanercept, to the brain is getting praise around the world as a "radical breakthrough" in the treatment of chronic neurological dysfunction.

"It's magic," said Dr. Rene Alfaro, an ophthalmologist from Mexico, of the single-dose injection that almost instantly restored much of his wife's movement and cognition more than a year after an aneurysm and subsequent stroke incapacitated her left side. "It's like a click."

Within minutes of receiving the injection on Monday, Anna Alfaro walked without a cane, got up from a chair more easily and regained sensation in her left arm. Hours later, with some of her left eye vision returned, she could see the phone clearly enough to dial a number for the first time since her illness.

Her response is not unique.

In a peer-reviewed study published Dec. 1 in the Adis medical journal, "CNS Drugs," Tobinick's Institute of Neurological Recovery gave etanercept injections from November 2010 to July 2012 to 617 stroke patients and 12 patients who had suffered a traumatic brain injury (TBI) — 161 of them Floridians, largely from Palm Beach, Broward and Miami-Dade counties.

5. Stroke

l had one back in July. Upon waking discovered my entire right side to be paralyzed. I was discharged from the hospital seven weeks later with outpatient therapy continuing. l've just finished checking flight costs to JAX, area accomadations and researching further info on this treatment. l want the use of my right/arm/hand/leg/foot back ...

6. Wonder why he runs the "Institute for Neurological Recovery"

and yet is an internal-med MD and not a neurologist/neurosurgeon? I find that a little odd. I also don't understand the injection method--is he injecting the enbrel into a vein, or into muscle/fat tissue? Sounds like the hanging upside down part is meant to use gravity/high venous pressure to concentrate the med in the neck/head area, kind of how snakebite victims are supposed to keep the venom-affected area lower than the heart (to minimize venom being circulated through the venous system until treatment). Interesting, will have hear more about it.

7. The world of Dr. Edward Lewis Tobinick, Dermatologist.

This study, like most are solely authored by Dr.Edward Tobinick, Dermatologist, Institute of Laser Medicine (hair removal) who also are the same staff and home of Institute of Neurological Recovery which also went under the name Institute for Neurological Research. Tobinick began making claims in 1998 for the off-label use of the then new rhumatoid arthritis drug Etanercept (Enbrel). Tobinick promoted the use of this drug for disc-related conditions such as chronic back pain. Tobinick created his own 'patented' administration of the drug and called it DiskCure with claims of relief within minutes. Tobinick advertised the treatment and charged patients thousands of dollars for this 'unique' treatment. Tobinick self authored studies to support these claims. A few years later Tobinick played the same trick, this time it was Alzheimer's, and after a number of years of causing havoc, Tobinick would appear to have prioritized his new target STROKE and Traumatic Brain Injury. A new patient can expect to pay around $4500 for an initial consultation and 1st injection. A vial of Etanercept (Enbrel) costs about $230. Just because it is expensive, does not mean it works. These scams cost some money to run. In recent years I have observed Australians being targeted successfully by Tobinick with his scams be they for Alzheimer's or STROKE etc.

8. Challenge Dr. Edward Tobinick.

Young heard a syndicated radio talk-show host tell last summer of a new breakthrough in hair removal, pioneered by Dr. Edward Tobinick of UCLA's Institute of Laser Medicine. The show spontaneously offered free surgery to the winner of a "Hairiest Man in America" contest. Young won easily and came here to collect his prize.Yesterday's eight-hour procedure to remove the hair on Young's chest, back and abdomen normally costs $5,000. But the doctor picked up the tab in exchange for the publicity.

In Los Angeles, there exists a Dermatology practice where these same people operate what they call Institute of Neurological Recovery. The employer at this practice creates 'studies' to support his claims in the off-label use of Etanercept.....a black boxed warning drug. This practice charges close to $5000 for an initial consultation and 'patented' administration of a single dose of Etanercept. (pharmacy price $250approx). Many of these studies claim to be approved by an Institutional Review Board. I challenge these claims and urge others to do the same. How many chronically ill patients and their families were informed by this dermatologist and his staff that the Institute of Neurological Recovery or the latter Institute for Neurological Research were actually the same premises and staff of the dermatolgy practice Institute of Laser Medicine (hair removal).

The larger areas for laser hair removal for women and men include; the abdomen, arms, arms partial (either upper or lower), back (either full or partial), back and shoulders, shoulders, chest, chest and abdomen, chest and areolar, full legs, partial legs (whether upper or lower), and buttocks.

The face and neck area for laser hair removal for women and men can include; the beard, forehead, between the eyebrows, sideburns, nose, cheeks, neck (back/posterior), neck (front/anterior), upper lip, chin, or combination upper lip and chin.

22. What did you decide?

I've read several times on this blog that people paid the $700 but I'm not seeing where anyone has gotten the shot and reported back that they have seen improvement.

I know we are desperate to find out if this is snake oil or if it could help at all.

I paid the $700 for the consult for my husband and they sent me an email with an attached scrip for a TB shot- but we haven't scheduled the trip yet. PLEASE somebody let me know if this is a scan. During the consult I was informed that the
price has gone up to $6800.00 - huge jump. Trust me like everyone else who is considering having the shot - this would be a miracle.

I called my family doctor and he looked into this and felt that it sounded good but for him to have the training would cost him $15,000.00 and then every patient he gives the shot he would have to pay a royalty fee.

Also, I found another website where they talk about Tobinick's procedure and you can get a video of how its done.

10. So confused...

They say if it sounds too good to be true, it probably is. And this guy has done a fantastic job of marketing his services. Finding any dirt is extremely difficult. Unfortunately, I've already paid a $700 fee for a phone consultation with the "medical" team since we don't live anywhere near Florida or California. Our call is tomorrow, and I'm thinking this is a scam... But I'm like so many of the others. My 32 year old wife had a terrible brainstem stroke almost a year ago and she can't move or talk. We're desperate for any kind of progress. There's a part of me that thinks if there's any chance this could work, it's worth the money and effort to make it happen. I don't want to look back and wonder, "What if?" I'm not sure what I'm looking for here - maybe I'm just thinking out loud. Any thoughts, comments, advice, insight would be appreciated. I'm not sure I'll back out - even if the call seems fishy. That's how desperate we are, and it's probably how he's getting filthy rich too... Sigh...

11. Spend your money on PT and OT, and don't stop. Do more PT/OT yourself.

Don't give this asshole your money. You know you're just chasing a quick fix that will be a disappointment.

Anyone who wants seven hundred bucks to talk to you is a thief.

I spent a year getting a relative back up after a brainstem stroke. It wasn't anywhere near as debilitating as the one your wife had, but it was pretty serious. It took a LOT of therapy. There will not be any running or jumping, but there is reasonably independent living, and that was the goal.

I'd go for electrical stimulation and things of that nature before I went for this snake oil.

There's a website (stroke.net, I think) that has people who have had strokes and caregivers on it; I'd join if I were you and reach out--you may get some ideas and help from people who have dealt with what you're facing.

17. Follow up to phone consultation w/Dr. Tobinick

Yesterday was our $700 phone consultation with Dr. Tobinick to see if my wife would be a candidate for his "stroke breakthrough" injection. Since we live in Kansas, the phone consultation was the first step. We were told if it was determined she wouldn't be a good candidate, they'd refund the money. But after reading all the scam talk, I was certain he'd take our money and invite us to Florida to take even more of it. But after explaining the severity of my wife's condition, he humbly opted to not see her and refund all of our money. I was quite surprised by this. But he did seem to actually want to help, but knowing full well how much trouble it would be for us to get down there, he said he didn't want to put us through that until he'd had more experience treating people with deficits as severe as hers. He did say to call back in 3–6 months to see if he'd had any additional success/experience treating severely impaired brain stem stroke patients with locked in syndrome, and if so, we may reconsider. But for now, I was relieved he didn't try to take our money and run, as I had expected. I'm still pretty skeptical. We'll see what the future holds...

12. “I can tell you this stuff is nonsense,” said Dr. Charles Morgan, medical director for the Integris

Dr. Edward Tobinick — the inventor of procedures using a rheumatoid arthritis drug for stroke, Alzheimer's, back pain and sciatica — is a controversial figure.

BY SONYA COLBERG scolberg@opubco.com | Published: June 13, 2011

Controversy surrounds Dr. Edward Tobinick and his patented discoveries of procedures of spinal injection of the rheumatoid arthritis drug etanercept, (trade name is Enbrel) for treating back pain, sciatica, Alzheimer's disease and stroke.
Tobinick is director of the Institute for Neurological Research, a private medical group. He is also an assistant clinical professor of medicine at the UCLA School of Medicine.

The Medical Board of California put Tobinick on probation for a year for advertising about an off-label use of etanercept for back or neck pain before studies were published in May 2002. He completed his board-ordered ethics training and other requirements in 2008 and is no longer on probation.

Tobinick calls his procedure of using etanercept a breakthrough discovery that has helped many patients, including one patient 23 years after diagnosis. He said inflammation in the brain persists for years after a patient's stroke or Alzheimer's is diagnosed and the drug appears to reduce that inflammation.

But local specialists are skeptical.

“I can tell you this stuff is nonsense,” said Dr. Charles Morgan, medical director for the Integris stroke center.

He said the drug is effective for rheumatoid arthritis but is not safe and effective in treating stroke.

“I would strongly advise patients to not do that,” he said. “You may get by with it. It may damage you. No way is it going to help.”

Placebo effect

Morgan attributes the apparent positive responses to Tobinick's treatment to the placebo effect or a strong, desperate belief that it will work.

13. Etanercept carries a Black Boxed Warning, an exceptional act by the Food and Drugs Administration

I urge you to read the Enbrel (Etanercept) Prescribing Information. Etanercept carries a Black Boxed Warning. This is an exceptional act by the FDA. Dr. Edward Tobinick is using Etanercept off-label, based on his claims of efficacy and safety. A

These highlights do not include all the information needed to use Enbrel
safely and effectively. See full prescribing information for Enbrel.
Enbrel® (etanercept)
Solution for Subcutaneous Use
Initial U.S. Approval: 1998
WARNINGS:
SERIOUS INFECTIONS AND MALIGNANCIES
See full prescribing information for complete boxed warning.
SERIOUS INFECTIONS
 Increased risk of serious infections leading to hospitalization or
death, including tuberculosis (TB), bacterial sepsis, invasive fungal
infections (such as histoplasmosis), and infections due to other
opportunistic pathogens. (5.1)
 Enbrel should be discontinued if a patient develops a serious
infection or sepsis during treatment. (5.1)
 Perform test for latent TB; if positive, start treatment for TB prior
to starting Enbrel. (5.1)
 Monitor all patients for active TB during treatment, even if initial
latent TB test is negative. (5.1)
MALIGNANCIES
 Lymphoma and other malignancies, some fatal, have been reported
in children and adolescent patients treated with TNF blockers,
including Enbrel. (5.3)

Important Safety Information

What is the most important information I should know about Enbrel® (etanercept)?

ENBREL is a medicine that affects your immune system. ENBREL can lower the ability of your immune system to fight infections. Serious infections have happened in patients taking ENBREL. These infections include tuberculosis (TB) and infections caused by viruses, fungi, or bacteria that have spread throughout the body. Some patients have died from these infections. Your doctor should test you for TB before you take ENBREL and monitor you closely for TB before, during, and after ENBREL treatment, even if you have tested negative for TB.

There have been some cases of unusual cancers reported in children and teenage patients who started using tumor necrosis factor (TNF) blockers before 18 years of age. Also, for children, teenagers, and adults taking TNF blockers, including ENBREL, the chances of getting lymphoma or other cancers may increase. Patients with RA or psoriasis may be more likely to get lymphoma.

Before starting ENBREL, tell your doctor if you:
•Have any existing medical conditions
•Are taking any medicines, including herbals
•Think you have, are being treated for, have signs of, or are prone to infection. You should not start taking ENBREL if you have any kind of infection, unless your doctor says it is okay
•Have any open cuts or sores
•Have diabetes, HIV, or a weak immune system
•Have TB or have been in close contact with someone who has had TB
•Were born in, lived in, or traveled to countries where there is more risk for getting TB. Ask your doctor if you are not sure
•Live, have lived in, or traveled to certain parts of the country (such as, the Ohio and Mississippi River valleys, or the Southwest) where there is a greater risk for certain kinds of fungal infections, such as histoplasmosis. These infections may develop or become more severe if you take ENBREL. If you don't know if these infections are common in the areas you've been to, ask your doctor
•Have or have had hepatitis B
•Have or have had heart failure
•Develop symptoms such as persistent fever, bruising, bleeding, or paleness while taking ENBREL
•Use the medicine Kineret® (anakinra), Orencia® (abatacept), or Cytoxan® (cyclophosphamide)
•Are taking anti-diabetic medicines
•Have, have had, or develop a serious nervous disorder, seizures, any numbness or tingling, or a disease that affects your nervous system such as multiple sclerosis or Guillain-Barré syndrome
•Are scheduled to have surgery
•Have recently received or are scheduled for any vaccines. All vaccines should be brought up-to-date before starting ENBREL. Patients taking ENBREL should not receive live vaccines.
•Are allergic to rubber or latex
•Are pregnant, planning to become pregnant, or breastfeeding
•Have been around someone with chicken pox

What are the possible side effects of ENBREL?

ENBREL can cause serious side effects including: New infections or worsening of infections you already have; hepatitis B can become active if you already have had it; nervous system problems, such as multiple sclerosis, seizures, or inflammation of the nerves of the eyes; blood problems (some fatal); new or worsening heart failure; new or worsening psoriasis; allergic reactions; autoimmune reactions, including a lupus-like syndrome and autoimmune hepatitis.

In a medical study of patients with JIA, infection, headache, abdominal pain, vomiting, and nausea occurred more frequently than in adults. The kinds of infections reported were generally mild and similar to those usually seen in children. Other serious adverse reactions were reported, including serious infection and depression/personality disorder.

These are not all the side effects with ENBREL. Tell your doctor about any side effect that bothers you or does not go away.

If you have any questions about this information, be sure to discuss them with your doctor. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

The so call wonderfull injection to improve movement after a stroke, worked for 10 hours at a cost of $4400.00;Highway robbery.
This took place in Boca Raton, Florida office with Drs Greenberg & Tobinick.
Beware of False advertisements!!!

Dr. Edward Tobinick's dermatology practice is called Institute of Laser Medicine (hair removal). These same premises go under the name of Insititute of Neurological Recovery, where the doctors and staff are the same dermatology staff. Please read 5 customer reviews who attended Dr. Tobinick's Institute of Laser Medicine (hair removal). If that's the standard of care that these dermatology doctors and staff do under their medical expertise............just imagine what they are capable of doing in the treatment area of severe neurological conditions.

9/21/2009
My experience was horrible as well. Told the same thing as another reviewer: your the perfect candidate (light skin, dark hair) and it will take approx. four sessions. It was for the hair under my arms, so a small area. Well, eight sessions and $2700 later and the hair is still there. Not sure how they can continually make false claims about their services.

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5 reviews in English

Review from Squirrel C.

274 friends
408 reviews
Squirrel C.

West Los Angeles, CA

4/26/2008
Too much detail, would be TMI IMHO, sooo....Professional staff, courteous to your needs, and efficient. PM me if you want more info.

I'll say more about parking...it's free and easy on Saturdays (don't let the fact that it's on the UCLA campus scare you - the place is dead on Saturdays).

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Review from Aaron J.

Elite '13
50 friends
159 reviews
Aaron J.

Hawthorne, CA

6/18/2010
PLEASE DO NOT GO HERE! YOU WILL REGRET IT!

I agree whole heartedly with the negative reviews on here. This place should be facing criminal charges for being a big time fraud! I had some unwanted hair zapped. I figured this was a good place since it is UCLA and all. I only dealt with a nurse who was nice enough, and the lady taking my credit card payments. I never met with Dr. Tobin. I got five sessions done for well over $2,000 dollars and the results... It didn't make the slightest difference. What a waste of time and money! Not only did their fancy laser make a hill of beans differance, it hurts! Nair for Men gets it done and it works great. At the very least, ask if they guarantee permanent removal. I guarantee they cannot.

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Review from Justin S.

3 friends
32 reviews
Justin S.

Costa Mesa, CA

8/18/2009
I have spent a few thousand dollars getting my back, neck and shoulders treated by their laser. Guess what? It hasn't made a difference! I have the same amount of hair there.

I was supposedly the perfect candidate - I had white skin, dark hair and I stayed out of the sun. They suggest approximately 4-6 treatments for good results. I figured that I'd do 7 just to be sure. As I was finishing the 7th session I said to the nurse, "So I guess this will be it for me. I have had 7 sessions now and I should be good." She replied, "Well, you're going to need to keep coming in to get touched up. There are no permanent results."

WHAT?!

Yes, they expect you to continually spend hundreds and hundreds of dollars to get zapped by their machine.

What happens after you get treated is all the hair in the area falls out and stays gone for about 3 weeks. They suggest that you have about 4 weeks in between treatments. So here I am becoming ecstatic about what I think are fantastic results. A little over a month after I finished the 7th treatment, I became very disillusioned. Now, about a year and a half after my 7th treatment, the areas I got treated look exactly the same. The only thing that ISN'T exactly the same is my bank account!

I am not alone in my experience either. In the middle of my misguided delight, I convinced a friend to get the same treatment. He has the same results that I have. He tried to talk to them about about his displeasure, but they immediately reminded him that he signed a legal agreement (prior to the procedures' beginning) removing them of any and all culpability. That's right, you have to sign a form saying that even if their laser makes you HAIRIER, they are not at fault.

The treatment hurts also. They say that it is gentle, but I assure you it is not. It hurts more if you have darker skin or if your hair is thicker. If you have ever received a tattoo, it feels a lot like that. If you are going to get treated, I suggest that you use the numbing cream they recommend.

I have received treatments at both their LA location and their Newport Beach location.

If you want unsightly hair removed (or significantly reduced like they suggest they can do), I DO NOT recommend going to the Institute of Laser Medicine. If you want to spend a ton of your money and receive nothing to show for it besides several painful experiences and an empty wallet, then by all means give these guys a visit.

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Review from A. C.

0 friends
13 reviews
A. C.

Richmond, VA

7/7/2011
I wish I had read these reviews BEFORE I returned here for a touch-up. I went here for 6 treatments in 2006, and once for a follow-up treatment in 2008. Like the other reviewers I never saw any sign of a doctor - except for the name plate on the door. Everyone seemed professional and helpful. For the most part my treatments worked so-so, but during the initial consultation I wasn't made any kind of elaborate promises. I was mildly happy with the results, despite the incredibly high cost. Fast forward to 2011, I've moved across the country but wanted a touch-up. I called several weeks in advance and set up an appointment. On the phone the receptionist said, "this appointment will be with Cassey (sp?), is that ok?" I should have taken this as a warning. In the past, every other technician I saw was really nice and patient. I know I'm getting laser hair removal. I know it's not supposed to be pain free. They were always really good at saying if it hurts let me know and I'll stop. Only a few times in the past did I say anything, because for the most part it's just uncomfortable, not painful. If for some reason it did hurt, the technician would apologize and stop. But not Cassey! She seemed to actually enjoy hurting me. I've now had 8 total treatments, and never during the 7 previous times have I actually physically needed to get away from the technician and the laser. At one point I almost jumped off the table/chair. I said, "ouch, that really hurts." Cassey did not apologize, and actually rolled her eyes at me and kept going. She was pretty sadistic with the laser! If I hadn't already paid for the appointment I would have left. (Of course they take a deposit for half over the phone before you even set foot in the office and then you have to pay for your treatment before you set foot through the door.) I will never go back there and if any of you out there are still considering going to this laser hair removal place, make sure you request NOT to have Cassey as your technician - unless pain is your thing.

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20. Hello!

hi, I am so glad I read these replys!

I am also from kansas, and my father is 51 and had a brain aneurysm christmas morning 2011. I just heard about this new shot that is supposed to reverse the effects of TBI (tramatic brain injury). I was told that this shot really works. My fiance has a family friend who in fact got the shot 2 weeks ago in california. She was unable to talk, dragged her left foot (stroke effected the left side of her body) and her left hand has been "fist like" since her accident quite some time ago. I got a call Saturday and 1 hour after the injection her hand opened up, she was able to walk, and is now able to talk! It seems way too good to be true, and I am trying my best not to get my hopes up. But i am so glad i came across your post because I called the office in California today and felt uneasy about putting down 700$ just to talk to the doctor. So i said that i would call them back. But i will definitely be making another call to them. My dad's left side is unable to move, and from the stories i have read it seems like the people who are "qualified" for this shot have at least minimal movement on that side. Im just hoping that all works out and more research come out so your wife can get this, She sure does deserve it!!

I'll let you know how the phone consultation goes with the doctor!
thank you
-Nicole

24. Welcome to DU and a suggestion, remove your phone number.

Copy what you wrote, self delete this one with your phone number, then repost it again without the phone number. I hate to say it but there are some jerks who stalk DU and leaving your number like this isn't a good idea.

That said, best wishes to your dad. Recovering from a stroke is not easy, hope he continues to improve.

19. Does this work?

Hi my name is Lisa and would love any feedback from anyone who has tried this for stroke patients or from anyone who can share any information about this shot. I have a friend who had a stroke a year ago and can not speak??? Please share any info you can. Thanks!!

26. No.

I have a close relative who was severely affected by a stroke a couple of years ago. He went by himself to one of the INR's seminars - or whatever it was - and they talked him in to forking over his credit card and paying for an injection ($6,000 to $7,000 - still trying to figure out exactly how much). He said he didn't feel a thing any time after it. He went back to the doctor and they convinced him that he needed to take a 30-day prescription of I-don't-know-what. Again, didn't work. He asked for a refund and they denied it. I have no idea what he signed in to - no idea what they injected in to his neck (until I read the other posts in this site) - and am just now trying to find some answers before I contact the INR myself. It probably wouldn't bother me so much if - at this "seminar" - they gave him literature, told him to go discuss it with his family and to think about it, then come back. But, they've got it set up like any other money making scheme - "act now while supplies last" kind of a thing. Get them all worried that if they don't get it done at the seminar that they may not have another chance. What REAL medical treatments work like that?